Geekdis Interview with Tonia of Tonia Says. null
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Hi everyone! I am very excited to bring you the first of several interviews that I have been working on for just over a month now. As with the GeekDis Group Interview, the aim of these interviews are to elaborate on the topic of disability representation in pop culture from the perspective of people in the disabled community. Today’s guest is a disabled blogger and writer that I have looked up to for quite a while, and I am very grateful that she took the time to join us for GeekDis. I’ve been reading Tonia’s blog, Tonia Says, for a few years now, and I have learned so much from doing so.

Without further ado, I’ll let Tonia tell you more in her own words.

The Interview

Hi Tonia! Thank you so much for agreeing to join me for an interview as a part of GeekDis, an open discussion on disability representation in pop culture. It is wonderful to have you here at Just Geeking By 🙂 Could you start us off by introducing yourself and telling us a bit about who you are and what you do?

I’m Tonia, obviously, and I started my blog, Tonia Says back in 2014.

I had noticed a lot of misinformation out there about disability and how to interact with disabled children, for example.  Information that largely came from their nondisabled parents.  I figured if one person was curious about this type of information, there were probably more out there who felt the same.

I started my blog as an information source for those nondisabled parents, and it’s grown into what I hope is a bit of a safe harbor for disabled people.  A place where they can come and know we’re not alone.  I’ve become more open about sharing some of the tougher things I’ve been through, as well as writing about everyday life, and things that bring me joy.

I also review popular books, and movies there  — usually this media is well-liked by the public — but ends up relying quite a bit on ableist stereotypes.  There is the occasional good review as well.

(My blog also contains links to my own children’s eBook, a middle grade novel, a disabled fiction series that is my passion, and my own poetry.)

So, I guess I not only blog about disability in the media, I also create my own media as a disabled person, which I think is important.

You’ve been reviewing pop culture from a disabled perspective for seven years, what are your thoughts on disability representation?

Honestly, I think it still has a long way to go.

Generally speaking, respectful disabled representation still seems to be the exception in the media, not the rule.  (It also remains extremely white and extremely male, ignoring the lived experience of many disabled people with various intersectional identities.)

Disabled characters on TV and in movies are rarely portrayed by disabled actors, and when they are, the writers in the writers room are (likely) nondisabled, so the disabled actor ends up doing a lot of extra labor.  When the actors are nondisabled too, representation has the potential to go extremely wrong.

In books, there still seems to be a high demand for stereotypical portrayals of disability (written — many times — by nondisabled parents of disabled kids.)  This portrayal ends up being particularly damaging and dangerous to disabled people.

Disabled characters still exist primarily for the consumption and education of a nondisabled audience.  

Disabled characters are usually minor / supporting characters whose storylines revolve primarily around their disabilities and not around them as whole people.

Conversely, if a disabled actor reads for an nondisabled part and gets it (which has happened) it feels like that character is disabled sort of in name only.  They obviously have a disability, but when it’s never discussed on screen, even in instances when it would make sense, the portrayal somehow manages to come across like erasure.

What are your thoughts on nondisabled actors playing disabled roles?

For me, it’s very rarely done in a way that feels respectful.  

Miles Heizer as Alex Standall in the Netflix show 13 Reasons Why is a rare example of this.  My sister, Tara, and I are finishing up a summer blog post series on this particular representation of brain injury.  You can find that here if you’re interested.

More often than not, though, seeing nondisabled actors in disabled roles feels like a mockery of disability to me.

I can’t see someone imitating CP-gait on screen (for example) and not see all the ways I myself was mocked and teased growing up.

In those situations, how does seeing a nondisabled actor playing a disabled role that is not discussed/acknowledged on screen make you feel?

When it’s a nondisabled actor playing a disabled role, ironically, it often IS acknowledged.  It’s just usually acknowledged in a way that centers disability in an exclusively negative way.

That makes me feel…misunderstood?  Unseen?  It makes me feel like people don’t want media that portrays disabled people as we are.  (Nondisabled) audiences want a portrayal of disability that makes THEM feel good about NOT being disabled.  Or that uses us as a lesson to teach a mostly nondisabled audience.

As a counterpoint to Miles Heizer’s portrayal of TBI in 13 Reasons Why, check out Tara’s and my reviews of The Fosters, where our favorite character, Jesus, (played by nondisabled actor, Noah Centineo) suddenly sustained a brain injury.

This representation was largely nothing but painful, damaging and traumatizing.

The point you make about someone not being able to imitate a CP-gait on screen really hit home with me as someone who has hypermobile Ehlers Danlos Syndrome, which has its own unique physical manifestations which cannot be imitated. For example, someone without EDS could not bend their fingers backwards or partially dislocate their joints, for example. 

Our bodies move uniquely. Do you feel that the fictional characters you have encountered with Cerebral Palsy accurately represent this?

Since you are speaking about the apparent depiction of CP on screen, I’ll mention two antithetical representations of CP on television.

First, on Desperate Housewives, there’s a one-episode exploration about the possibility of one of the characters having a baby with CP.  The scene with the baby receiving PT was nothing short of triggering, and when the child grew to about the age of ten, and used a crutch to get around, all I could see were the inconsistencies.  (Though, it is not specifically stated that the child has CP there are a lot of things about the portrayal that feel like that’s what they were going for…and missed.)  I wrote about the depiction in: I Need The Media to Stop Normalizing Abuse of Disabled Children.

And on 9-1-1, Christopher is played by actor with CP, Gavin McHugh.  Check it out on Hulu and you’ll see that his CP is not a caricature, because it’s a part of him and it’s authentic.  And because of that, we get an automatically more respectful and accurate representation of disability.

Could you give us some examples of disabled minor/supporting characters that existed primarily as a plot point?

Grace in The Fosters

Glory in Jack of the Red Hearts

Will in Me Before You

GeekDis Interview with Tonia of Tonia Says - My interview with disabled blogger Tonia of Tonia Says as a part of GeekDis, where she joins me to discuss disability representation in pop culture. null

You mentioned that books featuring disabled characters are often written by nondisabled parents of disabled kids. Could you tell us a bit more about this?

There seems to be almost a genre all its own:

Middle grade novels written centering disabled protagonists by nonidsabled parents of disabled children.  These books are likely written with the best of intentions, but in my opinion, their impact is harmful.

Books like Out of My Mind by Sharon Draper and Roll With It by Jamie Sumner both center wheelchair-using protagonists with Cerebral Palsy.  

Both books unwittingly center the parents at every opportunity, telling their own story of heroism and stress raising a disabled child.  Both books repeatedly use ableist language (as the disabled main character.)

Like it or not, these bring their biases to their books, and the way they portray these children is alarming.  (I won’t get into detail here, but if you want to read more of my thoughts on these books, click the links at each title to see my live-tweet of each book.)

One of the topics you talk openly about is being a disabled child. In your opinion, how important is it that pop culture includes an accurate representation of disabled children removed from a parent’s perspective?

The parent-perspective in the media on having disabled children is rampant.  We have seen time and time again how nondisabled parents corner the market on the depiction of their own disabled children (without proper context) on social media, but also in books, on TV and in movies.

As stated above, this representation is so damaging.  Because of society’s views of disability, a nondisabled parent’s view of a child’s disability is often fraught with misinformation, misconstruing a child’s natural gait or movement pattern as “bad” and our symptoms as “behaviors,” that we must be trained out of.  And I have to say it: those biases can be downright dangerous to disabled children.

And because so much of media about disabled children is created by nondisabled parents it is also (likely unconsciously) geared toward nondisabled audiences.  

I have watched Speechless (a show with an authentically disabled protagonist but that was run by a family member of someone with CP.)  And early on, I was excited to see it, and told all of my family about it.  But pretty quickly, I found myself seeing issues with the representation.  When I tried to discuss them with people close to me, their response was: “Tonia, not everything is for you!”

If representation about our own community is not for us…if all disabled children are getting in the media are stereotypical portrayals of themselves, they’ll grab onto that.  They’ll think: “This is accurate.  This is who I am and what I exist for.  I exist as a prop in a nondisabled story.  I exist in the world to make nonidsabled people feel better about themselves.”

I know, because this is how I felt as a child.  And it took years, and connecting to my community myself before I realized I didn’t have to conform to the stereotype.  I could write my stories from a disabled character’s point of view and share what it’s really like.

Disabled representation is for us.  And it is so important that disabled kids know that they exist to be exactly who they are.

I often say disability representation in the media (like it or not) teaches nondisabled people how to treat us.  But it also teaches disabled people, kids especially, how to view themselves.

In 2019, you listed being able to actively change disability representation on TV as one of your biggest accomplishments in the last decade. Could you tell us more about what happened?

One of my favorite shows when it first aired was The Fosters.

It was a show about a multiracial family headed by two moms, with kids by birth and adoption through the foster care system.

About halfway through the fourth season, my sister and I could tell the writers were gearing up to explore a disability storyline when one of their children — 16-year-old Jesus — sustained a Traumatic Brain Injury.

While the earliest episodes of the arc — the emergent hospitalization, surgery, etc — felt authentic, it wasn’t long before my sister (a brain injury survivor herself) and I noticed some alarming things about the portrayal: 

It was centered on the nondisabled parents and the strain and stress disability put on them.  All of Jesus’s legitimate anger and frustration at not being able to communicate (and consistently not having his limits respected) was being attributed to his brain injury.

No one in his family took his word seriously anymore and they were afraid of him, buying into the “TBI Makes Someone Violent” stereotype.  Physical restraint was shown.  His education was used as both a bargaining chip and a way to control him.  Jesus was cut off from his friends.  His diet was controlled.  At its worst?  His parents were discussing (honestly discussing) taking him to get shock therapy in two weeks time and threatening him with institutionalization.

Before it reached that point, but when it was clear that the writers needed to hear from the disabled community — and more specifically the brain injury survivors community — Tara and I wrote an open letter to the writers.  

An Open Letter to The Fosters Writers, From Disabled Fans

We had already been recapping the show. I started out as a fan, doing solely fannish reviews of a show I enjoyed, with a bit of disability commentary sprinkled in.  But when Jesus’s brain injury became apparent, I asked Tara to join me so we could address the disability representation together (a process that took 8+ hours total each time we did it.  More than 100 hours of essentially free labor.)  Each time, I sent a link directly to the writers who were responsible for the episode in question.  We had quite a bit of a response on Tumblr and I think between the open letter and the recaps, eventually the writers took notice of us.

There was a significant shift two episodes after the writers saw our reviews and after a midseason break.  If you can, check out this episode on Hulu (5×11, “Invisible.”)  If you can’t, just check out this scene from the end of the episode.  Which, we still feel, has the power to save lives.

After nearly a year of work, this scene felt particularly validating.  And while there were still problems with the representation — Jesus’s brain injury eventually faded into the background and became a nonissue — it was 10,000% more preferable than watching two parents seriously consider shock treatment and institutionalization for their disabled child.

As recently as 2020, Tara and I noticed one of the writers on The Fosters team taking issue publicly with ableism he noticed.  I responded to let him know how much it meant to me.  And he wrote back.  (To this day, I have been sending him our posts about 13 Reasons Why brain injury representation.

Ironically, one of Tara’s and my go-to shows right now is Good Trouble which is the spinoff of The Fosters.  And we have noticed authentic casting and respectful depiction of disability in this show (which has the same team of writers.)

So, it has been a big relief.

What do you think writers/producers could do to have better disability representation in their work?

First, they could make sure to have an actually disabled writer in the writer’s room.  Next, they could hire actually disabled actors when casting a disabled role.  And finally, they could be sure to hire a consultant who shares the same disability as the main actor, whose job it is to educate (so the bulk of that labor does not fall on the disabled actor.)

I think the publishing industry has a long way to go, too, though, because as long as there is a demand for books that rely on harmful tropes or gross stereotypes — as long as those are the books that sell?  Disabled writers aren’t going to be able to get a foot in the door, so to speak.

I also think there needs to be an understanding that many disabled people (myself included) create our own content knowing that the mainstream media isn’t accessible.  And that because of access barriers (both physical and societal) we often self-publish and that is just as valid as a widely published work.

I’m proud that my writing is widely available to whoever clicks the link.  They don’t have to pay to read good, authentic material.

Because we don’t all have the money to spend on the entertainment we’d like to enjoy.  We’re busy trying to survive.

Thank you Tonia for taking the time to talk to us!

Over to you

Thank you for reading my interview with Tonia! Please do take the time to check out Tonia’s blog posts linked throughout this interview to follow up on any of the topics discussed and to read more of Tonia’s work. You can also follow Tonia on Facebook, Twitter and Instagram!


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1 Comment

  1. Heather, Thanks so much for doing this interview with me!

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